Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study)

Abstract Introduction Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. Methods Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. Findings Fifty‐two ethnic minority members were engaged in group interviews and one‐to‐one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word‐of‐mouth. The main health and social care concerns were chronic long‐term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long‐term health conditions, health promotion and education, early care interventions and understanding community needs. Interpretation Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. Patient or Public Contribution Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.

implementation and evaluation. 15This means that identifying opportunities to improve access for communities is crucial.Developing an understanding of the research interests and preferred engagement procedures of ethnic minorities would ensure future research reduces the under-representation of ethnic minorities and increases the generalisability of research findings.This current study aimed to explore the health and social care experiences of ethnic and other minority populations in the United Kingdom and identify priority areas for future research.

| Study design
The REPRESENT study is a programme of work established to investigate the health and social care research priorities among ethnic minority populations in the United Kingdom. 17The current study presents feedback from qualitative data collected from ethnic minority communities in the East Midlands between May and September 2022.

| Study settings and participants
Ethnicity can be defined as a 'social group a person belongs to, and either identifies with or is identified with by others, due to a mix of cultural and other factors including language, diet, religion, ancestry and physical features traditionally associated with race'. 18This use of ethnicity allowed us to include inequalities experienced within broader racial groups-for example, White Gypsy Travellers (GT) communities.We also included other minoritised populations within the ethnic minority community (e.g., Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual [LGBTQIA]+ representatives).
All ethnic groups except the White British group were included in this study.Recruitment of participants was done through existing Patient and Public Involvement and Engagement (PPIE) networks, social media and snowballing.Purposive sampling and snowballing were also used to identify participants, including using local ethnic minority networks.To reach a breadth of participants, the Centre for Ethnic Health Research (CEHR) team utilised their existing networks to engage diverse ethnic minority groups with varying accessibility needs.This included using face-to-face, online and remote platforms for recruitment, which was facilitated through community networks and forums, including voluntary sector and faith organisations.Furthermore, the study was advertised through the CEHR social media channels and WhatsApp groups.
Participants included ethnic minority community groups, healthcare providers (HCPs) and researchers.Participants were recruited from across the East Midlands region in the United Kingdom (Lincolnshire, Northamptonshire, Derbyshire, Nottinghamshire, Leicestershire and Rutland).The sampling strategy was designed to include all protected characteristics within the Equality Act of 2010. 19e group and individual interviews were conducted by two authors (B.C. and S. C.) with extensive experience working with minority communities.The focus group structure considered cultural and linguistic factors (e.g., single-sex groups and language support) and availability.Data were collected virtually using the Zoom platform and face-to-face engagement based on participant availability and preference.Eligible participants were contacted at least 2 weeks in advance, and consent was obtained from each participant before data collection.Ethical approval for the study was received from the University of Leicester Research Ethics Committee.

| Data collection and analysis
The interview topic guide covered topics on health care experience, health and social care concerns, and health research (see File S1).The topic guide was co-produced and pretested with community members; in addition, specific questions were added for researchers and HCPs.
All data collection was conducted in English; however, ad hoc phrases were translated during the sessions with Polish and Somali communities where required.On average, group interviews lasted 95 min, and interviews 70 min.Audio recordings were transcribed verbatim directly to English by two researchers (B.C. and S. C.), and W. E. verified each transcript for quality, consistency and accuracy.A thematic approach based on the topic guide was used to analyse the data using Nvivo 12.0 software.The analysis followed the six-stage process proposed by Braun and Clarke: familiarisation with the data, generating initial codes, searching for themes, reviewing initial themes, defining and naming themes and producing the report. 20The transcripts were coded by W. E.; these were developed and discussed with the wider team to enhance identified transparency, consistency and promote reflexivity. 21Some research team members (B.C. and S. C.) have previously been involved in faceto-face contact with a few study participants during previous projects, which may have influenced their interactions with participants.However, the initial data analysis was carried out by another member not directly involved with the participants, and all team members reviewed the findings, so this minimised any presumptions in the data interpretation.

| Patient or public contribution
Members of ethnic minority PPIE groups and the CEHR supported the REPRESENT study design, conceptualisation and recruitment.

Seven community advisory board members representing the different
Equality Act categories reviewed the topic guide to ensure ease of understanding, cultural relevance and sensitivity.Furthermore, four study steering committee community members previewed the findings to ensure cultural accuracy.

| RESULTS
A total of 52 people participated in the focus groups and one-to-one interviews.Nine focus groups were conducted with 45 participants.
Individual interviews were held with seven people representing unpaid carers, nurses/midwives, general practitioners (GPs) and researchers (see Table 1).
Figure 1 presents a word cloud, created using Nvivo 12 software, of the most common 100 words participants used.
These words illustrated participants' reflections on the importance of social and health care in the community through health research for people, information and experiences.The word cloud also highlights priority health conditions of interest, such as cancer, diabetes and COVID-19, as well as critical issues for consideration, for example, access, language and cultural factors.
The experiences across all the participant ethnic groups were explored; three overarching themes were developed from the thematic analysis of the data, as summarised in Table 2.The first section addresses the first study aim, and the last theme addresses the second aim.

| Health information and healthcare seeking actions (Aim 1)
The most reported source of information was via online platforms, especially the Google search engine.At a community level, common information sources were word-of-mouth, local community organisations and networks, peer-to-peer support, family, friends and local pharmacies and GPs.Although online sources were common, several participants stated it was often confusing, and the information was sometimes exaggerated and unreliable, causing increased anxiety.Participants also stated that information about certain conditions could not be found online, for instance, guidance on managing a disabled child.…having a special needs child, there are few things you cannot find on the internet related to health, a disabled person… There is a lot of information online, but for some specific information, you need  When it comes to seek information/support on some specific issues (mental health, substance misuse), people will seek information in more private context, one-to-one support, individually.(FG, Eastern European)

| Medical, health and social care service experiences
A range of health issues affected ethnic minority populations, but no distinctive issues were unique to specific community groups.
The most common chronic conditions were cancer, hypertension, diabetes, dementia, autism, musculoskeletal pain and dental issues.
All groups reported mental health challenges, and participants stated this was rising rapidly within their communities, yet there was limited awareness and support for prevention and management.Two factors underpinning these issues were access to services and discrimination.

| Access to services
Factors included in this category were time, appointment availability, language, and how they affect different groups, for instance, parents with caring responsibility and the older generation.The most reported challenge was language, especially among the older population.In addition, some participants pointed out that men were less inclined to speak out about their challenges.As a consequence of the complexity of access to care, participants stated conditions such as chronic pain were often neglected, and major chronic conditions like cancer and diabetes often became more complicated due to lack of screening, delayed services, inadequate management and lack of awareness.Hence, early intervention was pointed out as an important area of consideration in ethnic minority communities and a fundamental first step to managing health and social care conditions.Nevertheless, these were influenced by various factors, primarily culture, fear, distrust, misconceptions and geographic location.Some communities reported difficulty knowing where to access needed information and support, but language barriers were a major associated factor.The impact of language on early intervention is described by a participant who lost a child due to poor communication: Language barrier in health can be a big problem … we did not fully understand things about our child, we lost our child, the awareness was not there.We did not have the language skills to be able to understand the full story.For ethnic minorities, having language support is really important.(FG, South Asian men)

| Discrimination
Some participants indicated that they were often ignored, dismissed, judged, received inadequate medical support and were treated rudely LGBTQIA+) The lack of mental health awareness, in addition to poor understanding of symptoms, was influenced by racial/cultural discrimination (e.g., general labelling of vocally expressive and loud African Caribbean people as 'mental health people') and gender variance.Among women, post-natal depression was high among new mothers, while males were least likely to talk about mental health.A South Asian participant explained this was because mental health was considered a 'taboo', and men were ashamed to express their  research, including positive concepts from past experiences, such as research focused on investigating problems related to health and communities towards finding solutions and new information for specific groups.
Negative research perceptions: were reported by those often afraid of getting involved.For instance, more African Caribbean participants relayed negative opinions of research, including the perception that they were being used as 'guinea pigs' and being used with no benefit from participating in research.These experiences made some groups more reluctant to participate in research.
Barriers to participation: was commonly related to lack of education, poor understanding of different groups' participation needs, past experiences, and not having access to research findings after research completion.For instance, participants shared expectations they wanted to see when participating in research, including being respected and provided with research outcomes and impact related to their community.
Motivation for research participation: was primarily to support the search for identifying health solutions that could benefit the communities.Although incentives were considered an important motivating factor, it was stated not to be sufficient encouragement to participate in research.
Increase research participation: was best thought through community involvement and empowerment.This includes considering unique community circumstances and cultural values, how health information is sought and alternative communication challenges, for example, engaging community religious leaders.Increasing research participation is also associated with increasing the confidence of community members in the care services.

| Research recommendations
Based on the ethnic minority groups in the study, the most common health research areas of interest for the representative groups were Subthemes Feedback/suggestions Supporting quotes We need to build long term with people in communities and engage with people on their terms.(Retired GP) Consider community circumstances and how health information is sought …understanding people's circumstances is also an important thing.Yes, I agree most of our community, ethnic minorities they do not want to take part in research because if people have bad health condition they can find the solution from their GP or somewhere else, so they do not think it will affect them.(South Asian Men) Several studies have identified similar challenges faced by ethnic minority populations accessing health and social care services. 9,22,23ese include structural and cultural discrimination, racism and social determinants of health such as socioeconomic status, housing, occupations, a higher burden of diseases and cultural barriers. 22idence has also shown that discrimination is a fundamental cause and driver of adverse health outcomes in ethnic minorities and health inequalities. 9,245][26][27] A systematic review found multiple associations between self-reported discrimination and health, and this included associations with poorer mental health, higher chronic disease incidence and preclinical indicators of disease, poor health behaviours and lower use of healthcare services and adherence to medical regimens. 28Ethnicity impact on health outcomes in the United Kingdom is shown among Black women, who are nearly four times more likely to die during pregnancy than White women, and most of them had severe and multiple disadvantages, including mental health concerns. 260][31] Mental health-related stigma, mostly among men, was of particular concern.Cultural stigmatisation was reported as the main barrier, and this was generally associated with poor awareness, similar to findings in other studies. 32,33Bias from health providers has also highlighted stereotyping and cultural insensitivity, which contributed to negative experiences, created barriers, hindered access to healthcare and influenced healthcare-seeking behaviours of ethnic minorities. 30ported stereotyping of mental health among Black people supports the evidence of the greater risk of detention of Black people under the Mental Health Act than White people. 34This experience further discourages people from presenting mental health challenges to health and social care providers.
Other studies have also observed a high appreciation for pharmacy services among ethnic minorities. 35,36A UK study showed that ethnic minority members appreciated the supportive role of community pharmacists and how these break down barriers to health service access, increase health awareness and build trusting relationships. 37Community pharmacists have also been reported as the most accessible primary care HCPs, and the advantages they provide include medicines consultations, quick access without booking appointments, and convenient timing. 35,37,38Another health service preference identified was receiving care from health staff from ethnic minority communities as well as obtaining information through community organisations.Other studies have also observed similar preferences among other ethnic minority groups.An advantage of having ethnic minority staff, in addition to improving access to care, is the potential to overcome language and interpretation barriers, which is a significant challenge among ethnic minorities. 35e common health and social issues reported reflect the general health burden of ethnic minorities in England, 39 and these were also mirrored in the suggested research priorities.Identifying effective interventions to tackle the challenges requires tailored, culturally relevant, and acceptable strategies.This can be achieved through research to test, compare and determine the best strategies for preventing and treating disease and informing health policy.A onesize-fits-all approach is inadequate as barriers identified vary between community groups.To ensure health policies serve diverse ethnic minority populations, all ethnic and cultural groups must participate in health and social care research.For instance, addressing the child development concerns raised will be understanding the unique experiences and cultural perspectives of different ethnic minority groups. 27,40Advantages of high-quality early childhood programmes go beyond direct health benefits and have a social We did a community initiative for ethnic minority groups based at Leicester General Hospital, a meeting with a GP-we gathered issues from the community and discussed with local GP … looked at what can be done and shared the feedback back with the community.(FG, African Caribbean) Reasons for seeking information sources outside official health channels were related to difficulty in getting appointments to see a GP, insufficient time to discuss more than one health issue and lack of cultural understanding.They also highlighted receiving poor health assessment and information from their GPs, with little to no information on some issues, and sometimes contradictory information compared to what was obtained online, as described by a participant below: …I was told by a staff member there that I am prone to sickle cell because of my heritage… I Googled, I did find that yes people from certain heritage are more likely to be diagnosed with sickle cell.However, I am not really from South Asian background, I am from a different part of Asia (Middle Eastern) … in the F I G U R E 1 Word cloud of 100 most commonly used words by study participants.T A B L E 2 Summary of identified themes and subthemes.the prevalence in my ethnic group is not as high as I was told, but the person who told me, made an assumption about me-quite poor assessment and information given.(FG, LGBTQIA+) Despite online information being common, a few groups were still excluded, e.g.those without internet access.A Polish participant explained how this communication gap and language challenges contributed to the delayed presentation of health issues at healthcare facilities.…many Poles, mainly those with limited language skills, in low-income and low-skills level jobs … tend to avoid contact with healthcare services until they are ill … when things are bad … due to fear of losing jobs … they fear potentially being asked to attend other appointments, they keep asking you to do other things, sometimes you regret why you accessed in the first place.(FG, Eastern European) Improving community health communication was considered a top priority for adequate health-seeking action.The key recommendation was to consider the right person to present the information carefully.This included finding someone from that same ethnic community known by the community, having bilingual HCPs and community champions/ ambassadors, and more direct interactions between the health services and communities, such as speaking on community radio and face-to-face conversations at community centres.Other crucial factors highlighted were privacy and convenient access to information.Privacy, providing information in a more private context, with one-to-one support, individually, was especially highlighted in relation to mental health and addiction-related issues, as shown: and differently from others, especially those from White ethnicities, due to their language and skin colour.A Somali participant shared an example of this: It depends on the person you are seeing.It can be a rude person who does not like your skin colour.Yes, they are professionals, but the way they act it would show that they do not like you … one GP can be good, and another not.Some will only see you for 2 min.Others will give you time, respect.(FG, Somali)In addition to the generally perceived discrimination, unpaid family carers described being ignored.This included perceived stereotyping by HCPs who often did not acknowledge the opinions of carers, as described by a participant who acted as a carer for their spouse.…eventhough I was the wife of the patient.Hospitals not listening to the wife, having to ask the patient, even though patient is clearly not coherent and is unwell.It's very dated and insulting to a carer.(Carer) Besides ethnicity and service issues, sexual discrimination and other biases were also reported.An LGBTQIA+ community member described how they preferred health services provided by pharmacists compared to nurses who often stereotyped and viewed them with 'judgemental attitudes'.Pharmacies are patient-focused … sensitive to your needs, responsive, and prompt … do not judge you.Contrary to nurses and their judgemental attitudes … you try to speak to them about certain things (e.g., sexuality), they give you these looks … judge you, stereotype you; assuming that you are of certain sexuality.When you correct them, you see the looks on their faces-the way they judge you.(FG,

) 3 . 3 | 3 . 3 . 1 |
emotions.A GT specified males between 16 and 40 years were of most concern as it contributed to higher incidences of alcohol and drug use and suicide.Mental health and men is a big thing.Depression and anxiety.Community pressures, it gets to them.They do not want to talk about this to their wife or men around them because they do not want to be a laughing stock.Therefore, they bottle up.Before you know it, it is too late.Lack of support/understanding leads to three things: alcohol, drugs and suicide… 16-40 years old men have the biggest problem.Men around 50s are not so impacted because their life is more settled/established.(FG, GT) General interaction with social services was limited due to discrimination and poor previous experiences with health visitorsespecially among GTs who have a unique nomadic and close community lifestyle, which sometimes concerned social service providers.It was also pointed out that social care staff were not well trained and lacked sufficient skills to manage certain conditions properly, resulting in some participants taking on most of the caring burden.A father of a child with a disability shared an experience of this.I have a disabled daughter… the staff from caring agencies do not have the skills required… They do not look at the patient's needs … and each person is different… Agency staff [care agencies] need to be more trained, improve their services.(FG, South Asian MenHealth research (Aim 2) Research understanding, barriers and motivators

1
Summary of study participants.
interactions between health providers and community members, as explained by a participant:

Table 3
Summary of research understanding, barriers and motivators subthemes.research as improving things, making things better for people and the whole society, communities, helping others… (South Asian men) …Like the research about Black women and mortality rate.We know in the Black community, there are more deaths because of the way babies are delivered, home births… (Somali) summarises the participants' understanding of research, the barriers and motivators for participating in research, and suggestions on areas to encourage more active participation.Understanding of health research: varied widely across all the communities, and there was overall low research participation history.Some participants had good perceptions of the purpose of Education about research, if people do not understand what research is about, they will not take part.Education first-taking part later.(South Asian Men) Lack of understanding of what prevents people from accessing healthcare Many patients go to see the GP as a last resort, not the first port of call.Need to understand why this is.Are there access barriers?It's difficult to speak on behalf of other people.Health services access and urgent care isn't always the best.(Retired GP) Empower communities Training people from the community to help with the research… Empowering the community to train community members.Once you train people, people can do it in the community.(Somali) Practical arrangements/location of research/who is in the room.Depends on who is in the room from the community, people may not want to speak up/share things in front of them/open up.(GT) …the latest invitation I received inviting me to take part in cancer researchrelated study, it asks for a blood sample.It states that this can be done in various locations (including mobile points, GP).